After a subarachnoid haemorrhage

[Norima]

To recap what I have just said in the New Members Forum, I had a subarachnoid haemorrhage with hydrocephalus on 24 January 2013. An extra-ventricular drain (EVD) was inserted on 24 January and removed on 3 February, coil embolisation was done on 28 January. The EVD became infected.

There are several things which bother me, but for now I will just mention a couple.

 

The dent where the EVD was inserted has got smaller in the last 18 months, but is still noticeable (maybe ½ inch deep and ¼ inch from front to back). It is also sensitive to the touch. Is it common for people to have have dents as a result of EVDs? And do they eventually disappear?

 

In addition I experience odd feelings at the front and top of my head on the right side. I hesitate to say "odd feelings" but it is hard to describe the sensation. It is a sort of tight feeling inside my head. Has anyone any experience of these sorts of feelings? Do they get better or is this something (else) I have to learn to live with?

 

Please don't suggest I talk to my consultant. Over the course of 4 weeks in 2 hospitals I was seen by several consultants and/or their staff but afterwards none seemed willing to accept responsibility for me.

[Tina]

Hi Norima,

The sensation you are feeling , like a tight feeling inside your head I also had after my bleed.

It sometimes also felt like it was rippling, almost a creeping feeling....so hard to explain!

My Consultant told me nothing at all of what to expect....this seems to be the norm sadly

But after reading and posting with others on here I found out that it is your brain settling down and repairing.

I had these strange sensations for about 2 years, they gradually became less.

I still sometimes get a creaking clicking sound but it does not worry me now, I am 6 years on.

I hope this helps a bit, as we know how very worrying and scary it can all be in the early stages.

My Drain has not been a problem to me, I did have a small dent but cant feel it now. but others I am sure will comment.

We can only share our experiences in recovery , none of us are medically trained here.

Have a read through the Forum, ask as many questions as you want. There are many helpful posts that will reassure you.

Glad you found us xx

[Super Mario]

I had an EVD and the dent is still there. I don't think it has changed shape or size and it is just over 10 years old. I have very short hair and it is visible for a week or so after a haircut as it is also bald.

[Daffodil]

Hiya. Like you I had an EVD and later had a shunt placed. I can still see and feel my drainage hole , it changes with the pressure of the weather and certainly in the first 18 or so months after the scarring around that would tingle and feel strange and even does now occasionally.

The way they place the EVD means the hole we feel is where the pipe went in but the exit scar and healing has to happen around it as they deliberately run the piping under the skin and out another part away from the hole to try and prevent the infection. ( sorry that didn't work in your case.) that means as sensation is a bit uncomfortable as it comes back to the cut and torn parts as it heals, that's my theory anyway. It has improved, but even now can be sensitive to touch.

As the brain heals from the bleed I experienced all manner of feelings , creeping sensations, tightness, tingles. No rhyme or reason to them but scary sometimes. Again it's got a lot better but can rear up when I am tired or overdoing things.

[Winb143]

Hi Norima,

I had ventriculitus followed by Sepsis,  when I eventually woke up (after a shunt was fitted) it was "click" a light came on in my brain.

 

I used to get itchy head so bathed it in warm salt water.   I told the surgeon that he was not very good at drilling.

He felt my dents as said "hmm see what you mean".

 

You will get there but it's a long haul, keep smiling no matter what.

Never give up xx

Best Wishes

 

WinB143 xx

[Louise]

Dents and things still there even now but not as bad as they once were, in fact hardly noticeable at all.

 

It all depends on the weather this humid stuff is nightmare but yes you do get used to it..

 

Repair sensations are sometimes frightening all I can say is if your really concerned a chat to the GP is a good idea & I said GP & not consultant, but if you have to please don't be put off by your experiences..

[Winb143]

Also I was told no stress as when I get stressed my lump swells up.

 

Good luck

 

WinB143

[DawnS]

It's almost three years since my sah and I still have a dent in the front right side of my head. If I pull back my fringe and raise my eyebrows you can see the skin dip into the hole. The dent is definitely smaller than it was to begin with and I can still use it as a measure of how exhausted I am as it gets wider when I'm doing too much.  

 

Strange feelings in the brain seem to be fairly common in the early days. My brain used to feel itchy and on occasion felt like water was being trickled over it. This lasted for around a year or so. When I am overdoing, I still get a tight sensation. It feels like someone has put a belt around my forehead and is pulling it as tight as they can. These days, for me, sensations in my brain are an indication that I need to slow down and rest. To begin with these sensations can be alarming but soon enough you come to recognise what is normal for you and the panic/worry reduces.

 

The lack of communication with your consultant is a recurring theme for many of us on BTG. It seems that they are there to repair the brain and as they have done that already they have no further input. The gaps can be filled in with other services - your GP, Headway and counselling can all help enormously but these are services you would need to put yourself forward for. Counselling is very useful as despite being thankful to be alive, it can be difficult to come to terms with the new you and the new life that has been thrust upon you.

[Gill C]

I'm 4 years post clipping and still get an itchy scalp or creeping sensation. It's been worse in the hot weather sadly. There are a range of odd sensations that affect my scalp including stabbing pains or a feeling of pressure but I know they are entirely normal after speaking to people on here

[Norima]

Thank you all so much for your replies to my post. It's nice to know I'm not alone!

 

In fairness to the NHS parts of it have been very helpful to me since my SAH, but unfortunately not the hospital which operated on me (they arranged the 6 month MRI scan with a bit of prodding but then took 4 months to give me the results .....).

 

Anyway knowing I am not alone will help me get used to the dent and funny feelings (plus feeling nausous etc). So once again thanks.